Over the past couple of years I have often felt like my life has been aggressively and almost completely stripped back. The core of my life is still much the same as it has always been. Yet I often feel like a tree that has been radically pruned. With so many of the branches of my identity and the things that I used to do being brutally chopped off and left to die. Leaving something quite exposed and bare, with many stubs where branches used to be.

When you spend most of your day lying down, and the time you can be upright is exceedingly limited by various intense and horrible neurological symptoms, you find that your life becomes extremely restricted. Everything becomes immensely simplified in many ways (even though there are also many complexities to contend with too). Life mainly consists of things you can do lying flat, or the few limited things you can do whilst upright – although still feeling very ill.

It’s been a very challenging journey to embrace a more simplistic life.

It doesn’t help that we live in a society that often glorifies busyness!

Our Western society is full of people who often seem to wear badges of importance – based, in part, on how busy their life is. Most people are forever expressing how immensely busy they are. This makes it extra hard for those of us who are ill long term, because we have to instead embrace a new identity that can no longer be defined by our busyness. Suddenly we can feel somewhat detached from normal society – a bit of a ‘nobody’.

Everyone around us seems to be carrying on with their ‘normal lives’ whilst we feel like ours is stuck.

We live in a never ending state of limbo, not knowing if or when it will change.

“… we are defined by what we do. Our careers. What we produce. It’s the first question asked (of us) …The implication is that if I am not busy doing something, I am somehow less than. Not worthy. Or at least worth less than those who are producing something.”

I really do believe that this is a massive problem for those of us who face long term debilitation.

We not only have to take a very humbling journey of coming to terms with it ourselves; we will also often have to face others’ questions, attitudes, and sometimes prejudice – as well as naivety and ignorance – towards our disability and inability to do what we once could do.

We find that we begin to lose much of our identity, because it feels like we are not doing much anymore. Rather than being an active member of society – we feel pushed to the side lines, often misunderstood and sometimes even forgotten about.

We are suddenly not so sure who we really are any more and our condition begins to knock our confidence – until we perhaps no longer feel like we ‘fit in’ with normal society like we used to.

Over time, we realise that we have to go through a deep and painful process of grieving and letting go of who we once were. And much of what defined us.

So that instead we can truly embrace who we are now – in this season. We actually have very little choice in the matter – if we cannot change our current circumstances ourselves then we have no option but to accept it and find a way to live the best life we can amidst all the restrictions.

I learnt over time that I had to stop torturing myself with what I could be doing IF I was well.I had to give up imagining how different life could be if I was healthy. I had to refuse to compare myself to what ‘normal’ people were doing and instead embrace the quieter and more simple life, of mainly being at home, often lying down. I had to see the opportunities that could be found here instead.

We must learn to establish a daily discipline of choosing to see the beauty and wonder in simplicity. To somehow embrace a simpler life. The more I go on that journey – the more I see that there are still so many things to be thankful for and enjoy here.

Despite the restriction, debilitation and pain.

Really it is all a matter of perspective. As many things in life are.

Attitude is everything!

Since I have battled this chronic illness I have realised more than ever that we are often fed a lie by society and the media that our life should always be lovely, fun, immensely satisfying and great. Everything should be as perfect as it can be – and it will be – IF you have enough money, health, great jobs, nice homes, loving families, expensive holidays and up to date gadgets etc. Then we will all be perpetually happy.

BUT it’s just not true!

Hence why there are so many miserable, struggling people who actually have all those things in abundance. Sometimes it’s the people I know who have the most of all those things who are the least happy. Mainly because that mindset draws you into a never ending cycle of desiring more and more – which only leaves you increasingly discontented in the end. Because there is always someone around who seems to have a better lot in life and appears to be happier than you.

I have learnt so much through my two-year journey about trying to be more grateful for the small, everyday things, whilst learning to let go of ‘the dream’ of ‘normal living.’ In doing that (which is a very raw and painful grieving process) I learnt I could find so much joy and wonder here too. And if I can find it here, then I will be so much happier – as well as more content and thankful – when I do hopefully get well. If I can learn contentment without having all the things the media tells me I need – then I will be happier for a life time regardless of whether I stay sick or get well.

It’s a lesson I have also had to embrace with regards how I parent my children. It truly is heartbreaking when sickness robs you of being the parent you always desired and planned to be. It’s a very difficult thing to face and unfortunately you can find yourself envying other healthy normal parents, which doesn’t help.

When I experienced a complete physical and mental breakdown at the end of 2015, it was the grief of letting go of being the Mum I was and wanted to be that caused some of the deepest inner pain. I am so very thankful that my girls are now that bit older and slightly more independent, which makes things so much easier for us as a family. And yet currently I can’t go out with them or do most of the fun or even necessary things we used to do.

I really am currently stuck at home, mainly lying flat, nearly 24/7.

However, I have also learnt that sometimes my kids can learn better life lessons from us facing this as a family than they could if life was just ‘normal’ and great. I realised that if I can’t find a way to truly live here, in the midst of the disappointments, then how can I help them to know how to face their own challenges and disappointments in life? They will certainly come at some point. If as a parent I can’t come through the crisis, then what does that teach them? But if my children can learn how to endure life trials – from me and my husband – then they will hopefully be much more stable and wholehearted adults.

Adultswho can weather the storms of life and stick out long term relationships much better. Meaning they may well be happier and more fulfilled adults because of this. It will also hopefully help them to grow in compassion for others, so that they learn not to ignore or avoid another’s pain, but instead look at how they can share it and help support another in and through it.

Compassion is a stunningly beautiful quality to have.

As my body is so restricted on the outside, I actually often feel the energy of what’s within intensify. It’s like there is this ball inside me with a mixture of so many different emotions. I know I have to redirect the ones that want to pull me into a dark place and allow the positive ones to become increasingly dominant. So I am trying to focus my own pain on connecting and helping others in theirs.

I have decided that I must find a way to live like this – so that I can help another walk through their own deep darkness of facing this condition or similar debilitation.

It’s allowing the love, grace and compassion that is within me to break out to help someone else. It’s channelling my hurt into feeling another’s pain with them so that I can then say, “How can I help you today? What advice can I give you from the lessons I have – sometimes painfully – learnt over the years.”

These are some of the simple things in life that I can still embrace and still do. And it’s when I am focused on things such as these that I am drawn less into only seeing the negatives of my current predicament. It is then that I often find the beauty that is found in simplicity. And it reminds me that even if my body remains debilitated, on the inside I can still feel fully alive.

So let me embrace the wonders hidden in the simplicity of my current circumstances. Because if I can do that – in this place – I will hopefully discover a deeper contentment and satisfaction that may well last a lifetime as well. So that IF one day I can leave this whole immensely difficult season behind for good, I will at least have learnt more lessons and disciplines through it that will become the firm foundations of my life tomorrow.

So that although I have had to experience a major pruning and cutting back that has left me looking exposed and bare today, perhaps in the end it will simply leave room for growth that will allow new shoots to form tomorrow. Producing a stronger tree in the future that is happier, healthier and bears good fruit in the right season.

None of us know what tomorrow will bring.

But if we can all learn and grow enough today, so that we can somehow find the inner strength to face whatever might be thrown at us tomorrow, we will be able to take our stand in the crisis and allow this cry to rise up from within us to say:

“However bad this gets and however long it goes on for… I am determined to find the best life that can be lived here – in all its gloriously redefined simplicity.”

“There is no growth without change, no change without loss and no loss without pain.” – Samuel Chand

One of the most painful, yet ultimately liberating, lessons I have learnt since being ill long term, is the potential suffering has it has to bring far more humility and compassion for others into our lives.

Anyone who has suffered from any debilitating chronic illness, a life changing disease or injury, or has gone through a season of suffering due to the loss of a family member, or other traumatic events, will tell you that it truly humbled them in a way normal life never can.

When things go wrong in our lives we crave to have normality back – as if it’s the most precious gift of all. We fondly remember how much easier life was, even on the ‘tough normal days,’ when we had our health or loved one and life was going ok.

But when you have faced some kind of personal tragedy, or some kind of deep suffering barges its way into your life, you soon learn how hard it is to lose what you perhaps took for granted before hand. You discover how much your confidence and coping mechanisms get crushed.

It is often only in suffering that we truly learn who we really are. We become more aware than ever of our many personal frailties and weaknesses.

We wonder if we truly have the strength to make it through.
It’s usually only when we see what ‘rock bottom’ truly looks like for ourselves, in all it’s darkness, pain and desolation, that we begin to understand how ‘rock bottom’ looks and feels for others.
When you meet people who have faced suffering like you, or even differently, but in a similar light to you, there is a knowing look shared between your eyes when you meet, or a deeper message running through the words when you talk. There is a heart connection that silently says, ‘Yes, I know…. life is so very tough sometimes…. I know what it’s like to be completely broken…. and I know what it’s like when you have no idea about what you are going to do make it through.’

“The beauty of humanity is that suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart. It has the power to break through masks, if we let it, because it touches who we really are.

And we all need that: Sometimes our hearts need to be exposed. Our weaknesses need to be seen.

Because it is then we realise that we are ALL just fragile humans. It is then we realise that we are ALL more similar than maybe we thought. It is then we know that we ALL face challenges and we ALL feel pain.”

I penned those words in one of the first blog posts that I crafted a year after we lost my Mum. It was a time of processing my thoughts and emotions, whilst trying to connect with others. Thankfully, I had already taken the time to walk myself through that difficult, but rewarding process of increased self-understanding, a few days before I embarked on my next, even bigger, encounter with pain and life changing suffering. I fell from a ladder and sustained a debilitatingspinal CSF Leakthat I still have today over two and a half years later.

It has been through this more recent journey, that has included walking through a different type of grief, that has taken me so much deeper into those same truths I wrote about then. Suffering does touch our hearts profoundly, it reaches to the core of our being. It strips back all the trappings of everyday life and reveals to us the things that really matter. Masks and pretence are thrown away, as we are pulled out of our comfort zones and realise that we cannot do this alone. Those of us who once considered ourselves rather strong and able, suddenly find that we are, in reality, far weaker than we ever imagined.

….. And it is truly humbling.

But that is why there are elements of suffering that we can also embrace, because often it makes us kinder and more compassionate people in the end. It stops us being so judgmental of others – it can actually level the playing field of life – as we truly see that we are ‘ALL just fragile humans.’

“In his delightful little book ‘Off the Sauce’, Lewis Meyer writes: If one could use only one word to describe the feeling of an AA (Alcoholics Anonymous) meeting, it would be love. Love is the only word I know that encompasses friendship, understanding, sympathy, empathy, kindness, honesty, pride, and humility. The kind of love I mean is the kind Jesus had in mind when he said, “Love one another.” Shoes might be shed, attention might be diverted, but there is a closeness between AAs, a closeness you seldom find anywhere. It is the only place Iknow where status means nothing. Nobody fools anybody else. Everyone is here because he or she made a slobbering mess of his or her life and is trying to put the pieces back together again. First things are first here…. I have attended thousands of church meetings, lodge meetings, brotherhood meetings—yet I have never found the kind of love I find at AA. For one small hour the high and mighty descend and the lowly rise. The leveling that results is what people mean when they use the word brotherhood.”

I read these words recently in a wonderful book by Brennan Manning called ‘Abba’s Child, The Cry Of The Heart For Intimate Belonging.’ They are such challenging words to us all. A profound reminder that it is only in the deeply humbling experience of coming to the end of ourselves, and truly realising how weak, broken, messed up, selfish, dysfunctional and ‘not good enough’ we ALL are, in our own ways, and being real and open about it to others. That it brings the ‘levelling’ that is desperately needed to show the deepest love, grace and humility to others too.

When you know the dark reality of ‘reaching the end of yourself’ you do find that ‘we are all more similar than we think.’ We are ALL humans who have weaknesses and insecurities, which become increasingly obvious when we are faced with an extremely difficult season of suffering.

Suffering exposes our many weaknesses, it makes us feel awkward and uncomfortable and can fill us with shame when we shockingly find that we lacked the ability to cope as we thought we should. But sometimes we must simply let it do its work in us. To embrace, rather than run from what it discovers, then face it, be real about it and look at what we can learn and how we can change.This is always the start of a deeper transformation that will make us kinder, more accepting and loving people.

“Not everything that is faced can be changed. But nothing can be changed until it is faced.” – James Baldwin

Do you not love the idea of a world where ‘status means nothing’ and nobody is trying to ‘fool anyone’ anymore with their masks, carefully crafted exteriors and pretence? When we are aware, honest and humble about our weaknesses as well as strengths, so that we can be kind and compassionate about an other’s as well.

“If you think you are too important to help someone, you are only fooling yourself. You are not that important.” – The Bible*

Suffering helps us to see that maybe we were not quite as strong, good or important as we maybe once thought. It helps us to acknowledge and see our weaknesses – if we embrace it properly. Which will, in turn, hopefully take us on a new journey of self awareness. We then find that we have to accept the reality of where we are. Even with its many difficult and uncomfortable thoughts and feelings, as well as its multitude of insecurities and unknowns.

So that even in the midst of it we begin to see that even when we have hit rock bottom, it is not always such a bad thing to experience. Because then I will taste a bit more of that unique humility that is found there, I will know what it’s like to battle darkness face on. I might walk with a new limp where suffering took me down for a while. But ultimately I managed to get up and carry on regardless, even when the scars and wounds are still there.

It’s in the raw vulnerability of those real moments, when we can reach out our hand to another, and our eyes and words will meet in that place of unspoken heart to heart understanding. And it’s there we will find we can walk together through our storms; as equally broken, yet ironically stronger, kinder and wiser humans.

Until one day we find how much it has changed us.

And that is the moment we truly begin to see the wonder, humility and connection that can come from suffering…

… but only IF…

We choose to let it do it’s mysterious work deep within us, by finding the resolve keep seeing the beauty that still resides in its very painful midst.

“The beauty of humanity is that suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart.”

Yesterday I watched a deeply moving and beautifully filmed advert (yes an advert!) for an American energy drink of all things.

Adverts have certainly changed over the years.

It’s about a top ladies basketball player from the U.S.A called Elena Delle Donne and the intense bond that she has with her special needs sister who cannot see or hear and has various other health issues and learning difficulties.

It is such a beautiful and moving film showing how they deeply communicate and bond through touch and other senses.

The basketball player speaks about how the simplicity of feeling the wind against your face becomes something so profoundly beautiful when you imagine not being able to see or hear.

It fills her sister with “pure joy.”

But there was one line in particular which touched me deeply. It spoke to me so loudly and grounded me in this difficult season I am in.

“You don’t focus on what you don’t have, you celebrate what you do!”

Wow!

How often do we forgot this profound yet simple truth?

How often do we focus on everything that is wrong with our lives and then miss celebrating the wonder of what we do have?

At the moment I am in quite a lot of pain. Sometimes my spinal fluid leak seems to flare up my nerves in my head, down my spine and throughout my body. So that even when ‘lying flat’ (which normally brings great relief) my whole body just feels ‘in pain’.

It’s not helped by the fact that I am trying to write this on my phone whilst lying flat.

Which just seems to exacerbate it.

And yet, when I feel inspired, when I have something to write, I just want to get it out. So that I don’t forget. So that the stirring within me is not lost and the words that are bubbling inside me don’t go flat.

So what do those words from the advert mean to me? In this moment when pain meets a different perspective? When I have to try and see differently than how I feel?

“You don’t focus on what you don’t have, you celebrate what you do!”

There are two opposing perspectives through which I can see my life at the moment.

The first focuses on the disability of this condition and what I DON’T have. Everything I have lost. The uncertainty of the future. The challenges of getting medical treatment. The endurance needed whilst waiting months for hospital appointments. The constant pain, fatigue and limitations.

The second focuses on what I DO have. The blessings of a loving and supportive husband. A roof over our head and food on the table. Of my two beautiful girls being old enough to not need me to do everything for them. The fact my accident didn’t paralyse me or cause lasting serious brain damage. That I can be ‘upright’ more than I used to. That I can see and hear and get to write, listen to and watch things on the wonderful handheld computer that is my smartphone.

Two different ways of seeing. One that can quickly lead to despair. The other that leads to gratefulness.

Both true, both real.

And yet one can lead you to darker ways of thinking. The other to joy and bright memories.

It is so very hard to keep perspective when you are in pain. The more you endure pain, the more strength it takes to stay positive and thankful.

Your body screams at you:

“But this is too hard!

I’ve had enough!

I can’t take this anymore!”

But your heart pulls at you whispering:

“You can STILL love,

You STILL have purpose,

You WILL have better days,

Things CAN get better.”

When I take my eyes off what I don’t have and move my gaze to what I do, it transforms my thinking. It brings light into dark places. It reminds me that although things are tough, they could be worse.

A thankful heart is not only the greatest virtue, but the parent of all the other virtues.~Cicero

There is a verse in the bible that says: “Be thankful in all circumstances,”-1 Thessalonians‬ ‭5:18‬‭

If your life is going well it’s easy to be thankful, but when things don’t go well gratitude is so much harder.This bible verse can then just feel like a kick in the shins.

“It’s alright for them with their happy, easy life (like we really know what battles others face). If I could just be fully well – THEN I will be thankful.”

And yet, I do believe there is ALWAYS something we can be thankful for. In ALL circumstances. Even when we are hurting and in pain.

I can remember early on in my CSF leak journey, when I still thought I had Post-Concussion Syndrome and was literally stuck lying down in a dark and quite room, I couldn’t even look at my phone screen or listen to music. One day I was feeling really fed up and self pity was knocking on my door persistently and wouldn’t leave me alone.

I had some pistachio nuts to eat that day, the ones that you have to remove the shell. And I decided in a bid to deal with my self pity, I would think of something to be thankful for as I opened each and every nut.

Something so simple really did change my perspective at that time.

It’s amazing the number of things we can be thankful for when we are disciplined to remember them.

It’s not always easy. Each and every day there is some point when my thinking can start falling into ‘woe is me with all my burdens and pain.’ Pain screams despair at you. When it’s particularly bad you wonder if you will ever make it through another day.

And yet I do make it through those days and those dark hours. And then I stumble upon videos like the one above and the words jump into my heart reminding me:

“You don’t focus on what you don’t have, you celebrate what you do!”

And yet again I find that I have to dig deep to find the gratitude and strength to press on and keep fighting another day.

We then find that we are perhaps stronger than we think. Gratitude gives fuel for the fight. It grounds us in a better perspective. And reminds us that although things are not necessarily going well – there’s STILL so much to celebrate in THIS moment.

“Gratitude turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity…it makes sense of our past, brings peace for today, and creates a vision for tomorrow.”– Melody Beattie

These beautiful lyrics are a reminder that we sometimes have to slow down enough to live in THIS moment. To not let life rush us by. To make the most of every experience and to enjoy sharing those moments with others. Forgetting the ‘what-might-be’s’ and learning instead how to ‘slow to now’ so that we can be fully present;

TodayNowIn this moment.

The challenge of learning to BE, is just that. It’s about being present now, today; whatever today may bring. To not be defined by what we do or the titles we own.

Instead it’s about being:

ME, simply me, NOW.

This is probably one of the main lessons I have been learning over the last 18 months.

To be fully present TODAY,not distracted by fighting the limitations I currently face or the unknowns of tomorrow. But instead choosing to embrace THIS MOMENT and making the most of the opportunities I have HERE.

It’s not been easy. In fact, I have probably found it harder than any other point in my life. Because when you are dealing with difficult circumstances it is so easy to miss the wonder of the small things that still surround us. And yet, I have set out to learn and change for the better. To learn how to ‘let go’ of the unknowns, even when it’s so hard and when the future can seem so uncertain.

It’s a journey. I am still learning.I face the daily battles everyone else faces in their minds.(Particularly those of us fighting serious/ chronic illness or other turbulent circumstances).

And yet I hope that in sharing what I am still learning that we might learn together and in that way my journey might just help someone else.

So how do we learn to BE? It all sounds deep, but what does it really mean?

LETTING GO

Recently I have learnt a lot about the need to ‘let go’.To realise that there is so much I can’t control that I can only let go of. To choose not to allow worry and anxiety to take over and constantly dictate my mood and behaviour, overshadowing all I do.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it’s own. – Matthew 6:34*

Worry and anxiety are usually caught up in our fears of the future and the ‘what if’s’. When we allow them to take over our thoughts they pull us to a place where we feel out of control and where the future feels beyond what we can cope with. That is what happened to me during the dark days at Christmas 2015 that I write about in ‘Breaking Through the Darkness.’

Letting go is often challenging, because you feel like you are letting go of everything you can’t control one minute only to find yourself taking it back the next. It actually takes learning new disciplines of the mind to learn to replace negative thoughts and learn how to redirect them.

It can often feel like an exhausting battle. But I do believe it is possible to find ways to replace negativity with positive thoughts and perspective.

On a practical level, deep breathing & relaxation can be a good outward form of letting go that can sometimes help us to deal with the inner things. The physical action of breathing in deeply then breathing out slowly can help us to let go of some of the tension and anxiety in our bodies.

BEING GRATEFUL AND THANKFUL

“It is not happiness that makes you grateful. It’s gratefulness that makes you happy.” – David Steindl-Rast

These words are from David Steindl-Rast’s TED talk; ‘Want to be happy? Be grateful’. He talks about how we can learn to be grateful in EVERY given moment. It’s about a thankful perspective; CHOOSING TO SEE what we DO have instead of focusing on what we DON’T.

This is so important. Especially when we are dealing with difficulties in our lives. The storms in life have a tendency to pull us into them so that we can’t always see what we DO still have and the things that we CAN still be grateful for.

For me, gratefulness is often directed towards God. I daily try to thank Him for all the wonderful things in my life. We can learn to develop a daily habit of being thankful – practically we can write things down, pray about them or just choosing to focus our thoughts on them.

“I think that many times we let what should be extremely special to us—things we should be extremely grateful for—become too commonplace”. – Joyce Meyer

LEARNING TO SEE WHAT IS AROUND US

Learning to BE allows us to open our eyes to SEE more of the wonder of the world around us. To notice the beauty of nature and the joys of human relationship. We can become more aware of our surroundings. Taking time to look more deeply and discover new things.

I have walked a lot in our local area over the past few months and discovered so many new places I had never been before. Sometimes there can be beauty all around us but we miss it because of our busyness or the distractions in our mind. Some days we need to be intentional about looking to SEE what is ALREADY around us.

REDISCOVERING PURPOSE

I believe that we are all designed to have a purpose; a role in this world that only we can fulfil. Endeavours that help us to feel alive and make our mark on the world. However, ask anyone who has faced having to ‘give up’ what they love to do due to injury, illness or other circumstances and they will probably tell you how hard it’s been.

Our identity is so caught up in ‘what we DO’ that when we can no longer DO those things we can feel purposeless. It feels like our life is of little value anymore.

Scott Dannemiller writes:“… we are defined by what we do. Our careers. What we produce. It’s the first question asked (of us)…. The implication is that if I am not busy doing something, I am somehow less than. Not worthy. Or at least worth less than those who are producing something.”

We can learn to manage our emotions rather than allowing them to manage us. –Joyce Meyer

But I also believe that we have to learn new ways to deal with negative circumstances so that they don’t pull us into a cycle of negative thoughts.

The fact is physical rest is NOT always good for our minds. We DO need to rest and we certainly DO need quietness. But sometimes the silence can be deafening, especially when rest is enforced. This is because rest can cause our minds to go into overdrive. Our thoughts take over and if they are more biased towards the negative, silence can make them worse. (Think of times you couldn’t sleep because your thoughts were ‘so loud’).

So we need to have resources that help us to be still and restful and yet simultaneously focus on more positive things. Music and meditations are good. I also love listening to inspiring talks like TED talks, other people’s stories of trials they have faced, as well as teaching and inspirational messages that encourage my faith. These help me to focus my mind and gain a better perspective through prolonged rest.

So I am again choosing to ‘learn to Be’. I am not yet fully recovered from my CSF leak journey. Whilst some of the symptoms linger I have no choice but to learn a new way of living in which I cannot DO everything I would like to do.

But instead of fighting this season and getting worn outas I did at Christmas,I have to ‘let it roll’ to a certain extent. Yes, there are many things I can do and can change that will help my situation and I need to celebrate those. But I also have to realise that there are also many I just cannot change myself. So instead of frustration consuming me, I have to learn, each and every day to ‘let go’ of the ‘what may be’s’ and ‘slow to now’ so that I can savour;

Every BeautifulMomentThat STILL exists HERE.

Please do comment below and share some of the things you have learned about ‘living in the moment.’ You never know, it might really help someone who is struggling.

Hope deferred makes the heart sick, but a dream fulfilled is a tree of life. – A Proverb‬*

Have you ever reached the end of yourself?
REALLY reached the end of yourself?
When you are depleted at every level:Physically, Mentally, Spiritually, And psychologically?

When despair sets in and a darkness envelops you that feels so strong it literally attempts to strangle any life and hope out of you?

My world came crashing down in the week running up to and over Christmas this year and I fell apart in a way I never would have thought I could or would.

You see – I am strong!I don’t give in easily! I have a very real and deep faith in God! I have a healthy thought life! I don’t do being ‘weak’ so well!

I had held on all year.

Through an immensely difficult year for our family, following a serious and unusual spinal injury (a CSF Leak) that left me with major neurological problems.

I had finally received more treatment (a second epidural blood patch) for debilitating Low Pressure Headaches caused by a suspected CSF leak, and I had to muster up all the strength I had left to be positive, overcome fear and give recovery its best go. As I wrote about in When All that Remains is Faith, Hope & Love.

I had to bestrong enough. Somehow I would be strong enough. I wasn’t going to give anything else away to this horrible condition.

I wouldn’t let it take more of my life.

The problem is that sometimes life takes us to places that are quite simply beyond us. Things don’t work out how we thought they would.

We give it everything we’ve got.

And then we find we have nothing left to give.

We humbly discover that we too are one of ‘those’ people we perhaps used to look down upon.

And it blasts everything we once thought about ourselves out the window.

‘We’ become ‘them’.
The one battling a chronic illness.
The one who ‘broke down’ mentally.
The one who felt like escaping life was perhaps better than living it like this.

And a new journey starts.

After weeks of waiting and battling for treatment – a second epidural blood patch – everything was poised in my mind.

THIS HAD TO WORK!
I HAD TO BE WELL AGAIN!

Being a positive, faith-filled person I filled my mind with that hope. Surely after all the discussions, waiting, battles and disappointments – it would work – IT HAD TO!! Our family couldn’t go through the trauma and chaos of any more upheaval because of this horrible and unusual injury.

I finally had my blood patch and all appeared to go well – although it certainly wasn’t an instant ‘fix it all.’ So I did what I always try to do – focus on the positive, believe, step out in faith and trust that as I regained my physical strength and conditioning that I would find complete health.

I did all that I could to push through various lingering, unpleasant symptoms. Stay positive and keep going. The problem was my body and mind was exhausted and as I pushed it more and more, it began to shut down. I survived for a time on shear willpower and adrenaline but 3 weeks after my blood patch I developed acute insomnia.

I would go to bed exhausted, sleep for 30 – 60 mins, then be awake all night …..every night…. for two weeks.

No ones body can survive like that whilst also battling a major neurological condition.

But I tried to keep on going, I thought ‘if I just keep going then I will get tired enough to sleep’. Then my conditioning will get back to normal.

I just wanted to be well for Christmas to leave this difficult year behind in 2015.

Things spiraled out of control physically and mentally – my symptoms seemed all over the place – before crashing in every way.

It was Christmas.

Usually a fun-filled family time of sharing gifts and eating together.

Christmas 2015 is a blur to me. I cried my way through it, in all honesty, exhausted, depleted in every way and not even wanting to live anymore – if living meant this.

I felt so very unwell and the relief that lying flat used to provide was not alway’s there. Which is why I couldn’t sleep. It was torture. My body and mind were utterly exhausted. I didn’t know what was going on.

I assumed that the blood patch had eventually failed and because of all the battles to get it I was not sure I could access another one.

I could no longer think straight. I could no longer see a way forward. I lost my perspective.

I naively and ridiculously found myself ‘wishing’ that what I had was terminal – because at least there would be an end in sight, if it was. At least there would be an escape from the inner and outer pain that I felt.

PAIN CONSUMED ME.

I felt stuck between an inner pain, grief, physical pain and such exhaustion that death seemed the only way out. Yet I knew to choose death would devastate those I would leave behind. Which added to my pain.

Darkness enveloped me and pain became my reality. Hope felt out of reach.Faith attempted to hold on with its finger nails but was losing it’s battle.

My pride was shattered.
I was not so strong after all.
I couldn’t do it anymore.

Hope deferred makes the heart sick – A Proverb‬*

My heart was sick and I felt lost in a pit of despair that no one could lift me out of. Even my wonderful husband was struggling to reach me.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

I had never imagined I could be ‘that person’. That I could reach a place where thoughts of depression, despair and even suicide not only became real but became an obsession.

I just wanted it all to stop!!

I couldn’t do this anymore!! I couldn’t take the chaos!! I couldn’t take feeling so ill!!I couldn’t face the battles of trying to convince doctors to help!! (I actually thought me falling apart mentally would make my chances of getting help for my underlying physical condition even more problematic. I was scared that they would assume it was all ‘in my head.’).

And yet I first had to face the reality of where I was. I had been battling an injury that directly affected my brain – for a year. I had spent almost 6 months of that year in bed, lying flat almost 24/7 and the rest of the year at nothing like full capacity.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

But, I still felt like I had failed. I blamed myself.
One mistake with a ladder had cost our family so dearly.
One accident had robbed us of our future.
One moment had wrecked EVERYTHING!
I decided that I had then probably ruined my last chance of getting better by ‘blowing’ this blood patch by doing too much.

I had no ‘fight’ left in me so hopelessness washed in like a flood.

EVERYTHING BECAME DARK.

I couldn’t see past the darkness. Attempts to battle negative thoughts whilst being physically so depleted and unwell seemed fruitless.

I JUST WANTED TO ESCAPE.

I convinced myself that my family would be better off without the burden of such a debilitated, chronically-ill wife and mother.

The pain of thoughts of dying came face to face with the pain of thoughts of living.

I DESPAIRED OF LIFE ITSELF

“Courage isn’t having strength to go on – it’s going on when you don’t have strength.” -Napoleon Bonaparte

BUT……. IN THE MIDST OF THE DARKNESS LOVE BROKE THROUGH!

All was not lost.

Love reached out to me and helped me to hold on.Grace was still there waiting to be rediscovered.
I had to open my eyes again to see that the light of love was still burning in the darkness.

Family and friends simply loved and supported me. They helped me to rediscover a better perspective. My 8 year old daughter used to come and sit on my bed and with all the passion she could muster she would tell me how much she loved me and that she wouldn’t want any other Mummy but me – even when I am so unwell.

A new journey began.It was not easy. It has been painful. It has been hard. It has been confusing.

I have wrestled with myself. Wrestled with my identity. Wrestled with my faith. Wrestled with the darkness.Wrestled with various neurological symptoms.Wrestled with how to move forward.

It has been a very confusing time symptoms-wise. After the new year things began to improve. Some things were still like low pressure headaches. Some felt different. It was hard to know what was going on in my body, brain and mind. Doctors were not always sure either.

I had to discover the strength each day to put one foot in front of the other to just get through intact. To pull through the pieces of a broken life and somehow find hope again.

Darkness had enveloped me at a time when I felt like I couldn’t find God any more. Hope returned as I discovered He was there with me all the time.

I just couldn’t ‘perceive’ Him.

I had to rediscover God’s love and grace. Learn to ‘let go’ of the life I had lived and choose to trust and hope that I could recover and that there was something better ahead. I had to battle the fear and anxiety that tried to persuade me that I would never be free. I had to learn to get comfortable with stillness, quietness and to embrace true peace and rest on a deeper level.

I had to learn to perceive God’s voice in a new way and hold onto the truths spoken over me.

I have had to rediscover who I am in its simplest form and be OK with a more simple life for a time.

A new depth of humility helped me to see that I had sometimes judged others ‘weakness’ because I didn’t understand them. I have now developed a deeper empathy and compassion for others facing challenges and struggles; especially those linked to chronic and mental illness.

It’s been an immensely difficult journey and one that it has taken me a while to write about. For a long time I felt like I had lost my voice and had very little to say that could help others.

And yet.

I know that as we talk about our deepest weaknesses and vulnerabilities, others can connect with us and know that they are not alone. It then gives our own pain more purpose because our story can bring a ray of light in the midst of another’s darkness.

“We may impress people by our strengths; but we connect with them through our vulnerabilities.” – Nicky Gumbel

It can be invaluable to know that someone else is also struggling and that your journey can help them too. We can then navigate the stormy seasons in our lives TOGETHER and some how help one another to weather the storm.

Albeit wounded.
Yet stronger.
With a new perspective.
More appreciation of life.
And a deeper empathy for others.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” – Haruki Murakami

Please do feel free to comment below.To read more about my initial injury and journey with a CSF leak/ Low pressure headaches you can see these posts.

*Proverbs 13:12 from The Bible

UPDATE March 2018: It is now looking likely that after epidural blood patches I may well have experienced some rebound high pressure symptoms. This is a very confusing condition, that can be a severe complication of epidural blood patching/ CSF leak treatment. Here is my more in depth post about experiencing this after my 4th EBP in September 2017.

Life is a gift.
A wonderful privilege.
Full of adventure, love & happiness.
Life brings both wonder and excitement.

But,

Life is not easy.It is challenging.It often feels hard.

Hard work.
Hard relationships.
Hard choices.

Of course many of us recognise that some people have had a ‘harder life’ than others. (Which helps us keep a balanced perspective).

However,

We are also very aware of the challenges we ALL face.

Be kind, for everyone you meet is fighting a hard battle – Plato

Do you often feel that life is hard?Harder than you thought it would or should be?

Perhaps?Definitely?Always?Sometimes?

Why is it that?

I’ve been thinking a lot about this lately and it has caused me to think through a number of questions:

Is life actually meant to be hard or are we getting a raw deal?Do other people find life as hard as you do?Do you hope that life will get easier someday?

Sometimes I think we have believed a lie that life is supposed to be EASY.

That it is easy for some.

Easy for them.

In the West, we are sold that lie every day. Adverts, films, books, magazines and social media, all feed the ideal of a better, happier and more comfortable life.

But do things and comfort actually make you happy?

I often say to my husband that the media often sell us the lie about the ‘perfect family life’.

The good looking Mum and Dad have an awesome, romantic, yet down to earth marriage. They work hard, but also have lots of time to invest in their beautiful children. They have plenty of money, a stunning home, car, clothes and go on amazing holidays.

Life looks easy!

Does that not sound attractive?

But in reality family life is often anything but ideal.

FAMILY – is often hard work!

In many ways I have what might seem an ‘ideal’ family life. Matt and I have a great marriage. We have to work at it, like everyone else, but we managed to set a firm foundation from the start which has provided great stability in our home.

We have two healthy, beautiful, kind, loving and intelligent girls who flourish at school, are creative and full of life.

And yet we, like many others, find that in reality family life is often exhausting.Parenting is tough.Directing selfish kids is a challenge.

We can dream of consistent ‘family bliss’ but I am not sure that it really exists.

FAMILY – is often hard work!

Our kids regularly fight, argue, push against boundaries, complain and challenge us until we are tempted to run away and hide under a rock for a while – until things get easier.

Often ‘quality family time’ is far from wonderful. In fact sometimes it feels like something we all have to endure rather than thrive on. (Especially when you have small children)

I actually started writing this post on holiday. The ‘prime’ of quality family time. Supposedly a time of fun, laughter, love and relaxation.

….And although there is truth in that (we have had some wonderful times together)…

In reality even holidays don’t stop the responsibilities of being parents and the kids squabbling & complaining.

So what do we do?Do we just give up on family life?

No!

We know we have to push through the hard times so that we can then appreciate the wonder and beauty of family.

To keep on keeping on!

No one really lives the fairy tale ideal anyway!

I have just finished reading a fantastic book called ‘Leadership Pain’ by Samuel Chand. It was both refreshing and insightful to read him, and so many others, acknowledging the ‘pain’ that is unique to leaders. Whilst encouraging us to keep on growing, which means constantly raising the threshold of our pain.

Often people can look at leaders around them and assume they must have life all figured out. That they enjoy their ‘power’ and ‘bask’ in the limelight.

This is rarely the truth.

Of course people can pursue and abuse power and hide their true selves.

But true leadership is often more challenging than many of us imagined. In the same way that the responsibility of leading/ parenting our children is.

Leadership, like parenting, is often hard. It is often painful. You have to make many sacrifices. You will get hurt.

You are leading real people. Helping them to grow and develop. You have to have courage to lead the way, even when you haven’t been there before yourself. Even when people don’t get you or your decisions and push against your authority.

Samuel Chand writes,

“There is no growth without change, no change without loss and no loss without pain. If you are not hurting, you are not leading. Your vision for the future has to be big enough to propel you to face the heartaches and struggles you find along the way.”

Leadership and parenting are inherently HARD. So you have to have a vision for the future that keeps you going through the tough times.

You must believe that your current investment, as a parent and leader, is worth while. You need hope for your child’s future, hope that many of the people you lead, will grow, develop and move forward. That is where you ultimately find joy and satisfaction.

It all comes down to perspective. Without the right perspective we can get drowned by the hard times and lost in the pain.

Life, in its essence is often NOT easy and the sooner we get our heads round that, the sooner we can prepare our minds to face the challenges life brings.

ResponsibilityHard workPainSufferingRejectionPerseverance

Are all a fact of life.

Life, in its essence is often NOT easy and the sooner we get our heads round that, the sooner we can prepare our minds to face the challenges life brings.

We all have dreams for the future but they will usually not fall into our laps. Instead, we must face the fact that often WE have to make the right choices and keep on making the right choices for things to work out.

We have to CHOOSE the longer and harder road to experience longer term satisfaction.

We have to invest in our lives early on, making the necessary sacrifices along the way.

People want love without sacrifice.But that does not exist.Love and sacrifice are coexistent.That is why we find family life and relationships hard.

Leadership is the same. Great leaders are not driven by selfish ambition. They are driven by a desire to serve others. To do this, great leaders love their followers.

And if:LOVE = SACRIFICE.

Great leaders, like great parents, sacrifice for those they lead.

Sacrifice in its essence is hard.Which means true love is hard.

Life was never meant to be easy. Life is an adventure. Adventures are in their essence challenging. But they are also so exciting.

We cannot experience the joys of life without embracing it’s challenges. It is the hard times which help us appreciate the good times.

How true those words were in the season ahead. For about 12 weeks our family’s normality was snatched from us and we lived out a new normality that involved coping with injury, illness and a massive change in our day to day lives.

It’s now 3 months since I sustained a brain & spinal fluid injury and at last I feel pretty much normal. I finally feel like I am getting my life back. I still get a bit more tired than I would have done pre-injury and experience some other milder symptoms if I do too much, but I can finally begin to move on in my life and put the injury behind me.

‘Normality’ never felt so good!!

To be able to function pretty well in everyday life feels like such a blessing. I am so thankful for health, energy, family & friendship. Before my injury I could at times take these things for granted but through my injury I have suddenly become so much more thankful for them.

The last three months adjusted my perspective.

Sometimes it’s not until your normality is taken away that you really do appreciate it.

This week my husband was away with work and the kids were on school holidays. I was so thankful to be able to look after the kids properly and get on with life with Matt not being here – something I could not do for 12 weeks. I have also been able to get the calendar out and make plans for the future. It feels great!

It’s made me think a lot about thankfulness and how it is so often linked to our perspective.

If we take things and people for granted – we will no longer feel grateful for them. If we dwell on the negatives of our lives – we will no longer see and be thankful all the positives. If we feel entitled to something or someone’s attention – we will see it as a right rather than a blessing.

Thankfulness can be life changing for BOTH those who give and those who receive it. This is because when it is heartfelt it comes from a place of humility. To say thank you and truly mean it is a small act of generosity and appreciation and – although small – can be powerful.

But if gratitude is so important why is it sometimes so difficult to maintain?

I often see within myself and those around me how quickly we can slip into an ungrateful perspective. It can happen subtly at first, but often gains momentum, as we compare our lives and situation to others. When we measure our lives against our perception of others’ lives (which are often incorrect anyway). The results are jealousy and envy which are often the culprits behind our dissatisfaction.

If only……. I had a better:Spouse, partner, family, house, job, looks, body, car.

If only…… I had more:Money, holidays, rest, friends, food, things.

Then I would be happy. Then I could feel thankful.

It’s a vicious circle. It never ends!

The dissatisfaction takes over, it eats away at our hearts. It blinds us til we no longer see what we do have, instead focusing our thoughts & even words on all we don’t.

Comparison is the thief of joy – Theodore Roosevelt

This dissatisfaction is often fueled by media, advertising, social media and looking at others lives around us. We are sold the lie that we will be happier if only we have more than we do now.

When we can only see what we don’t have we will not be thankful for what we do have. We will also not be able to feel thankful for what others have when we consider them to have more than us.

Instead we become consumed with envy and it destroys us from the inside out.

I believe that thankfulness is one of the main keys to happiness. There is so much joy to be found in a grateful heart.

Maybe we need to see our lives with more grateful eyes.

We don’t need to wait until we lose something to embrace a more thankful perspective. We can choose to see things differently now.

The last three months opened my eyes and helped me to develop a more thankful heart towards everyday life and those around me.

However.

I am very mindful of the fact that it is so easy for me to fall back into old habits and old ways of thinking as time goes on. How easy it is to forget lessons learned in the past. So I hope through writing this and my other blogs about what I have learned over the past three months, that I will be able to remind myself about remaining thankful.

For each breath that I take.

For the wonder and opportunity of each day.

For friends, family and community.

For health and energy.

For the beauty of the world around me.

For our beautiful home and food on the table.

For provision in so many ways.

For everyday life and even the ‘mundane’ aspects of it.
(When you can’t have this you crave it. When you do have it you often crave something more exciting).

And on those days when I start feeling fed up or sorry for myself: because the kids are playing up, the house is in a mess, I look dreadful, I have too much to do, things are breaking and I can only seem to see what I don’t have & can’t afford. I hope that I will quickly choose to remember, to shift my perspective back to a more grateful perspective and remember when getting through each day was all I could focus on. When health and normality were longed for and yet seemed so far away. When I just hoped to soon be well enough to able to get out of bed and walk outside on my own, so that I could fulfill some of the simple things in life like get the kids to and from school, get the dinner ready for my family and keep the house tidy.

We have so much. Look around you and see with new eyes all the blessings in your life.

A simple thought or act of gratitude will bring you so much happiness.

We can develop a habit of waking up each day and thinking about things we are thankful for. You may well find that your day starts better when it begins with gratitude.

My injury and illness only lasted three months. Some people face bigger storms: a much more challenging health diagnosis, the death of a close family member, a marriage break down or they lose their job and can’t find another.

So many different storms can shake our normality, but thankfulness always remains one of the best keys to finding the strength we need to push forward with a positive perspective.

There is always something to be thankful for.

It’s all about perspective.

Try it! What can you be thankful for today? Who can you say thank you to?